Stories

Unlocking the Mind

An eight-year-old informing someone he’s afraid to get on a horse isn’t necessarily extraordinary. But when it happened during a therapy program for children with autism, speech-language pathologist Tina Caswell considered it a breakthrough.

“Like many children with autism, the boy was primarily nonverbal,” said Caswell, a clinical instructor in the speech-language pathology and audiology department. “But by using an iPad with a speech-generating application, he was able to touch pictures on the screen to activate a voice that said, ‘Don’t let me fall.’ When we assured him we wouldn’t let that happen, he pressed more pictures on the screen. ‘I will be brave,’ said the voice [from the iPad], and he stayed on the horse.”

It was a breakthrough, said Caswell, because the boy did more than convey a want; he interacted.

“It was his first access to self-expression, and he used it to go beyond asking for a toy or a drink of water. For the first time, he was sharing his feelings. His parents later told me it was the first time they’d seen their kid have a conversation.”

“Often, it’s the first time the children have ridden a horse,” Caswell said. “It’s the first time many of them have used the speech software, and more important, it’s their first time expressing themselves.”

One child communicated his understanding of addition, and his parents were completely unaware that he knew his numbers at all.

An additional element of horseback riding is the upright posture needed to sit on a horse. This position helps the children breathe deeply, giving them more potential to vocalize. But perhaps the most interesting part about being on a horse is the sense of adventure the experience offers.

“What we want to do is motivate the children and get them to enjoy communicating with others,” Caswell said. “If they’re enjoying themselves, they’re more likely to be engaged, which makes them more likely to use the iPad as a conversational tool. Some have even vocalized.”

Assistive technology isn’t a new therapy approach for children with autism. Nor is equine therapy. Rarely, though, have they been used in tandem.

“Since Luke has been in the program, I’ve found out he has a sly sense of humor,” said Stacy Horton. “Getting to know our son like that — I can’t tell you what that means to my husband and me. Because what we really want for him is to be as much of a normal kid as he can. If Luke can use the iPad to tell us what’s going on inside that head of his, the sky could be the limit for him.”

“Seeing parents watch their kids be like every other child — that was eye-opening,” Sherenian said. “I’d always pictured speech therapy as sitting in a small room at a table with a client.”

Lexi Runyan

Sherenian experienced more eye-opening moments working under Caswell’s supervision as a graduate clinician in IC’s Sir Alexander Ewing Speech and Hearing Clinic, which offers professional therapy services to area residents. In February 2012, two of those residents, Suzie and Jeff Runyan, brought in their 12-year-old daughter Lexi. Afflicted with Rett syndrome, Lexi had never crawled, had never walked, had never run — and had never spoken.

“Rett is a rare form of autism that very early on robs children of their muscle control and therefore their ability to move and speak,” said Caswell. “Sometimes people assume children with this disorder have cognitive problems, but the real issue is their physical inability to produce speech.”

Lexi’s symptoms began showing up during her first year of life.

“While most children could walk, sit, and stand, Lexi’s development was in reverse,” said Suzie Runyan. “She used to be able to hold toys and eat her favorite foods, but as she grew older, those abilities lessened while other children’s her age improved.”

By the time she was 18 months old, Lexi had lost both fine and gross motor control. But she could move her eyes, and that’s how her parents reached her.

“She’ll look right at what she wants and hold that gaze, and then move her head to see if you understand what she wants,” Suzie said.

Before coming to the clinic, the Runyans used two laminated cards, one reading “yes” and the other “no.” Jeff and Suzie would ask Lexi if she wanted a drink of water or to watch a movie, and Lexi would answer by looking at the appropriate card. The system worked well enough for basic wants, but what about communication on a deeper level?

“I know there’s so much going on in there,” Suzie said. “You can tell by her eyes.”

When Lexi came to the clinic, she was a week away from her 13th birthday. Caswell introduced her to the Tobii Eye Gaze System.

“It’s a keyboard displayed on a computer screen,” Caswell said. “To select a key, Lexi looks at it. An infrared camera reads the light from her eyes and forms a dot on that key. To ‘press’ the key, Lexi blinks. Using her eyes, she composes messages that accurately express what she wants and who she is.”

“In the two semesters I worked with her, I learned Lexi was a 13-year-old girl who liked to talk about clothes, jewelry, and country music,” said Sherenian. “It turned out, she was a girly-girl like me. We both love to play dress up, and we both like Carrie Underwood. The world had always seen her as some tiny little girl, but she’s a teenager, and she knows exactly what’s going on around her.”

“That was our goal,” Caswell said. “To bring Lexi to the point where she’ll be able to communicate socially with her family and friends and generally improve the quality of her life.”
Getting to that goal, though, is a work in progress because Lexi is still building her vocabulary.

“If we teach her the meanings of more words and how to spell them, she’ll have more options, and that will make her more independent,” Sherenian said.

“When the diagnosis was given, there was a whole lot of dire,” said Jeff Runyan. “It was handed to you as, ‘From now on it’s just going to get worse.’ And I’m sure there are cases when it does, but the eye-gaze is opening doors for Lex. We’d like her to be able to have a conversation with anyone who walks into the room. We want her to be able to take a test at school. Lex now has a chance to do those typical things, to be something other than just a girl with Rett.”

“I can’t wait until we can show everybody there’s a voice in there,” said Suzie Runyan. “The more it comes out, the more we can try to make as normal a life as we can.”

Oliver Chatterjee

Meghan Kennedy and Shami Chatterjee are also searching for their child’s voice. Five and a half years ago, their newborn son, Oliver, was diagnosed with cerebral palsy, a disorder that impairs muscle control. The effects vary greatly. In Oliver’s case, he’s able to smile and stroke his baby sister’s hair, but he can’t walk or wiggle his fingers. Nor can he speak.

“Oliver can’t use his throat muscles and his lips and his tongue to shape sounds voluntarily,” said Chatterjee. “That’s why we’re trying different technology options. The clinic at Ithaca College has been really useful for that.”

Oliver was two when his parents first brought him to the clinic in 2010. At that time, they used a whiteboard to communicate.

“We had one above his changing table, and we’d write words and letters on it,” Chatterjee said. “Every time we’d change him, we’d play a word game with him. Eventually, we had whiteboards all over the house.”

“We discovered he was attracted to big words, like paleontologist,” added Kennedy. “Oliver liked hearing the rhythm of them.”

Oliver has used a number of devices since his first session. Recently, one of them was a sheet of foam-core displaying letters and numbers. That previous weekend, at a science fair, he’d been told that dry ice is solid carbon monoxide that can turn into a gas without having to pass through a liquid stage. When Kennedy and graduate clinician Lauren Vollmin ’11, M.S. ’13, put the board within Oliver’s reach and asked him to name that chemical process, he pointed, in sequence, to the letters S-U-B-L-IM- A-T-H-O-N. A correction to the third letter from the end made him smile.

“In Oliver’s case, it’s not a question of intelligence or lack of engagement with the world,” Chatterjee said. “It’s about finding the access that allows him to express what’s going on inside him.”

Caswell agrees. “We’re trying to find ways for Ollie to overcome the limits of his body and efficiently express what he wants to say. Because his family started communicating with him early in his life, we’ve been able to experiment to see which assistive technology works best.”

That includes a range of devices. Some are as high tech as a speech-generating, touch-screen system programmed with word games, activities, and science lessons. Others are as basic as a typewriter keyboard displayed on foam-core.

“He’s motivated,” Kennedy said. “He wants to communicate, but it’s getting more frustrating for him as he gets older. He has all those thoughts that he’s struggling to get out.”

For example, after Oliver is asked a question, six possible answers appear on a touch screen. “He knows which one is right,” said Chatterjee. “But on the way to it, his finger accidentally brushes one of the wrong choices or overshoots the right one.”

Kennedy and Chatterjee have their eyes open to the fact that treatments are always changing, and what’s right for Oliver today may not be right three years from now. But they’re keeping their hearts open as well.

“I know one day he’ll be able to get those thoughts out of his head,” Kennedy said. “He’s going to teach his baby sister her numbers and her letters and how to spell. It’s going to be really exciting to know what my son is thinking and what he wants to say.”

Benefiting from Caswell’s expert knowledge of assistive technology, graduate students in the speech-language pathology and audiology program acquire the clinical skills needed to be effective speech-language pathologists. They also discover there’s more to a successful treatment than mastering switch controls and touch screens.

“I learned that every moment someone speaks with you is a moment to be cherished, not taken for granted, because not everyone has a voice,” said Sherenian.